a rabble-rouser

Category: health care

As I lay in my own bed watching the film Unrest, it struck me as incredibly unfair that scores of patients (85% of patients are women), who have Myalgic Encephalomyelitis (ME) have to fight for understanding from the world every day. I am a woman healing from breast cancer, a kind of cancer that’s suffered from the exact opposite problem than ME – a pink onslaught of awareness that is teetering on overexposure.

I never had anybody question my symptoms. When I presented to my family physician with a lump in my left breast, the slow cogs of the health care machine began to move to put me on the treadmill to diagnosis. Once diagnosed, I was sitting at a surgeon’s office one week later and under the knife two weeks after that. Radiation came two months later and that was that (except for my struggle with my mental health collateral damage).

As Jennifer Brea so brilliantly illustrates in her film, ME has no such diagnostic machine. Early in the film, her husband Omar Wasow wisely advises Jennifer as they are on their way to the Emergency Department:

If you say too little, they can’t help you.If you say too much, they think you are a mental patient.

What he says is true. Presenting at the hospital is tricky business. I’d add, there should be nothing wrong with being a mental patient, but of course there is. There’s plenty of stigma and disbelief that comes with mental or emotional symptoms. That should not be so, but it is. ME is not ‘just in your head’ but what if something else was? Care and compassion should not be dismissed simply because there’s been no found biological cause.

But of course I’m being naïve. Patients, and dare I say, women, are dismissed all the time. Even in breast cancer, common as it may be, women are, encouraged to deny the realities of their own body, as the great Audre Lorde says. Our side effects are scoffed at and dismissed, we are told we are lucky that we aren’t dead and to be quiet and be positive. There’s great pressure on those who have had cancer to ‘get back to normal’ and even worse, to be ‘better than ever!’ Nothing ever goes back to normal after a glimpse into death. But many in our families and in health care are uncomfortable with any narrative other than the ‘I’m cured!’ heroic story. This is not our reality.

There are many remarkable elements in Jennifer Brea’s Unrest film. Jennifer made the film from her bed. This makes me pause and wonder what able-bodied me has accomplished lately. She tells not only her story, but the story of other people around the world with ME too. This is not a story of redemption – there is no happy ever after. This is real life. She’s not afraid to be vulnerable and for that I applaud loudly. It is tough to put yourself out there, but it is absolutely necessary too. You witness her pain, her struggle and ultimately, the love of her husband too. Like Rana Awdish’s In Shock book, Unrest is a love story too. It is a story about caregiving administered with deep affection. At one point her husband Omar tells Jennifer, you bring joy to my life every day. This is a tender insight into what most people don’t understand about caregiving, as I say about caring for my son with Down syndrome – it is done for love.

My friend and former colleague Kathy Reid works in a pain clinic. She told me the first thing that she tells new patients is I believe you. So many times their pain has been scoffed at or minimized.

If people arrive at your doorstep in pain – any kind of pain – emotional, physical, mental, spiritual – do not dismiss them. Do not turn away. It is the job of the healer first to listen and then to believe.

To find out more about ME, check out the Tools section on the Unrest website. Us patients need to stick together – breast cancer, metastatic breast cancer, other cancers, ME, other chronic diseases. It doesn’t matter. The only way change is going to happen is if we pause in the fierce war to compete for resources to lift each other up.

I’ll end with quoting the entirety of Audre Lorde’s famous words from The Cancer Journals, dedicated to Jennifer Brea:

I was going to die, if not sooner then later, whether or not I had ever spoken myself. My silences had not protected me. Your silence will not protect you. But for every real word spoken, for every attempt I had ever made to speak those truths for which I am still seeking, I have made contact with other women while we examined the words to fit in a world in which we all believed, bridging our differences.

I read Rana Awdish’s book In Shockquickly and greedily over the span of three days. In books I tend to mark up pages with passages I want to revisit. Poor In Shock is completely dog-eared – pages turned inward every second or third page. This is the sign of a good story. In the grand tradition of physician writers Oliver Sacks and Paul Kalanithi, Rana Awdish has a rare talent for both science and writing.

It would be easy to describe this book as a medical memoir, but it is much more than that – it is a book of loss and grief over the death of a child. It champions quality improvement and compassionate care. In Shock is a love story too.

Dr. Awdish vividly recounts her time spent as a patient in the ICU with a sudden critical illness and contrasts it with her experience in the same ICU as a critical care physician. This unfortunate coincidence allows for insights from both sides of the bed as both a patient and doctor.

I’m all about the feelings all the time, so I appreciated Dr. Awdish’s skill at recounting how it feels to be a patient. She doesn’t white-wash the horrors inflicted in the hospital. She also offers practical advice to health professionals about using thoughtful communication techniques to avoid emotional harm. She emphasizes how as a patient, she was much more than ‘abdominal pain and fetal demise.’ She reminds clinicians how much patients can hear from their beds, even in critical care. I wince at her recollection of overhearing a doctor say in the ICU that ‘she’s trying to die on us.‘

The author serves up great insight into the makings of a physician and training programs that train compassion out of the most earnest of students. I believe the hope for change lies in medical education (and all health professional education), but alas, the workings of that education mirrors the dysfunction of the health system. The two are intertwined. I can only hope that sharing patient stories from both health professionals and lay-patients will help.

This book reminded me why I was a failed student nurse– I could not figure out how to detach myself from patients. Training to mold students into a ‘cooly distant authority’ happens in all health faculties, including nursing. Dr. Awdish describes her experience as a medical student in the pediatric ICU:

“I found it utterly impossible to be detached or reserved in that unit.”

Later, she was chastised by a supervising physician for expressing sadness for the death of a child, harshly learning, “…if we felt our feelings, we would kill the people we were supposed to help protect.”

My shock from In Shock was at the effort physicians make suppress to emotion, often at their own personal cost. My best experiences with physicians have been those when doctors dared show they were human – not in a check-box way – but in an authentic, vulnerable way. There are those rebels out there, but they are hard to find. The training and health systems seem determined to squash them down. I admire these kind champions even more now for swimming against the tide.

All is not lost and Rana does give us hope. She reminds us that there is “reciprocity in empathy.” She shares positive experiences, too, including one with a Nurse Practitioner who demonstrates compassion for the death of her baby girl. She explains how health professionals can “humbly witness suffering and offer support.”

Embedded in her harrowing story of experiencing a life-threatening event there is also an important love story about Rana’s relationship with her husband Randy.

“My bruised and discolored body was proof to him of what I had endured to stay with him,” she recounts. I thought of my own husband and how both the author and I are graced with partners who granted us unconditional love during our health crises. This deep, unwavering support can be healing too.

Dr. Rana Awdish’s In Shock covers a great amount of ground: shock at suddenly becoming gravely ill, losing her beloved baby girl and grieving for her previously healthy body. There’s shock at how it feels to be a patient, shock at the resistance to her attempts to change the rigid medical culture to be more patient centred.

It is a dramatic and engaging read. I was spell bound until the very last page. I might be predisposed to like this book as the mother of a son with a disability and now as a cancer patient. But this is a book for anybody who is a health professional or who has ever been – or might be – a patient (and that’s all of us).

I am heartened to have connected with Rana on Twitter and to discover she has a platform to preach for improved health communication as a speaker, writer and the Medical Director of Care Experience. While it frustrates me that us simple layperson patients struggle to be heard, it does give me hope that doctors-as-patients are able to use their own stories to influence positive change. Thank you Rana for gifting us your story. I know it will make a difference in the world.

Yesterday I had two separate diagnostic imaging appointments. One was for an ultrasound at the cancer agency and the other was for a follow-up mammogram at a diagnostic imaging centre. I finished treatment for breast cancer six months ago. Both appointments involved my poor beleaguered breasts, but otherwise the two experiences could not have been more different.

I sat in my therapist’s office today and deconstructed each appointment. I’m figuring out why I am so desperate for kindness in health care settings. A chunk of that is my own stuff – I seek comfort when I’m feeling vulnerable. But no matter my own personal reasons – I hope we can all agree that being mean to people in hospitals and clinics is not an acceptable option in Canada in 2017.

I present these two experiences to demonstrate how easy it is to be kind, how it does not take more time and how kindness is up to individuals and lack of kindness cannot be blamed on the ‘system.’ Never forget the system is made up of people. Even in a health care culture that does not promote kindness for its own staff, there is opportunity for exceptional folks to go against culture to demonstrate caring for those they’ve committed to serving.

Example 1:The Ultrasound
1. I waited among the bank of chairs in the hall, the first appointment of the day. A gentleman pushing a laundry cart called down the hall to me: ‘Hello there!’ This perked me up and made me smile – scared, anxious me, sitting alone in the cancer hospital for my first post-cancer treatment scan. Hello there mattered.

2. A man came out of the ultrasound room. A man to do my breast ultrasound! But he had a warm smile and called me by name. Come and get changed, he said and I’ll meet you in the room. Put the gown on with the back open, he added before he disappeared. I was greeted warmly and clearly told what to do. I appreciated the option of the gown. (This will make sense as you read my other experience).

3. I changed and went into the room. The lights were darkened and there was soft classical music playing. The environment was comforting.

4. The whole ultrasound took about half an hour. This nice man talked to me the whole time. He asked about my cancer treatment in a conversational kind of way. He told me what he was doing as he was doing it and also shared with me what he was doing next. Providing information about what was happening and what to expect next was a great comfort.

5. He said – this might hurt. Tell me if you feel pain. He also said, ‘I’m almost done’ as he was wrapping up. He told me when he left the room and why. He wasn’t afraid to acknowledge my pain.

6. I was still wound tight as a top, clearly worried that all my cancer wasn’t gone. He said to me, ‘don’t be worried.’ I knew full well he wasn’t allowed to tell me anything about my scan. The results of the ultrasound would be faxed to my oncologist in a week (alas, it is the holidays, so I won’t find out the results until the new year). But his ‘don’t be worried’ – even if it wasn’t true, validated my concern and was actually sweet. He lessened my anxiety with his words.

I walked out feeling okay. It wasn’t what this man did – it was how he did it. And none of it took more time. And, surprisingly to me, it did not matter one bit that he was a male technologist because of his compassionate approach.

And then, one hour later, in sharp contrast, I experienced the cold, the officious, the not-so-kind experience.

Example 2:The Mammogram
1. I had a mammogram earlier this month, but had been called back for another appointment. I asked the booking clerk when she phoned, ‘why do I have to come back?’ She said she didn’t know. So I spent sleepless nights thinking they found more cancer. Not telling me why I had to come in again seems cruel.

2. My husband, having dropped our son off at school, met me at this appointment. We sat in one crowded waiting room until I was called into another waiting room. On the door it said: Women only. No men were allowed. My husband sat on a bench outside the elevator for the next hour. Not permitting my partner to accompany me is not patient or family friendly.

3. I sat in the second waiting room for a long time. I was hoping I wouldn’t get the same technologist as before, as she was unfriendly. (Irony alert: having a woman technologist does not guarantee a good experience). It turns out I got another woman, who was equally as unfriendly. I knew then unfriendly was the culture of this diagnostic imaging centre, and only the most exceptional clinicians would rise above it.

Then there was this sign:

I knew to expect it because I had been there before, so I was wise to them. I brought a cardigan to wear in the mammogram room. At my last appointment, I had to strip from the waist up in front of the technologist and stood there, unnecessarily exposed, cold and topless. This time I brought my own cover-up.

There’s so much to say about this sign. First, the idea of being efficient by not encouraging gowns is baloney. I sat in the waiting room for 40 minutes. Forty minutes is plenty of time to change into a gown, isn’t it? And for environmental impact? Yes, I guess doing laundry is bad for the environment. All my years of hating hospital gowns and I never would have guessed their solution to sterile gowns would be to take away the gown. Yes, I could have taken a gown but this was clearly not encouraged. There were other signs too, saying NO CELL PHONES. There was a stereo on the floor, tuned into a Christmas music radio station that cut in and out as people walked past and played loud commercials. The room was packed. All of us women were lined up in rows in chairs, our fear palpable. Signage and physical space sets the tone for the whole patient experience.

4. Once I was called in, I had to strip from the waist up. I put my cardigan back on and pulled it tightly around me. The woman did not introduce herself. She did not tell me what she was going to do. I said casually – it is too bad we don’t have gowns. ‘Gowns just get in the way,’ she responded. Oh. Dignity starts with giving options to minimize patient nudity. (Do I really have to say this?).

5. I don’t want to discourage women from getting mammograms, but this mammogram hurt a lot. She did tell me they wanted a closer picture of one part of my breast – which happened to be in an awkward position – close to under my arm. I was jammed into the mammogram machine. I whimpered as she tightened the machine around my breast – this one, my cancer side, still swollen with edema from radiation. She did not acknowledge my pain and clamped down on it some more. Not acknowledging pain does not help with suffering – in fact, it increases it.

6. She must have taken ten more images. Each time it hurt more. I tried to breathe but I was told to hold my breath. I was starting to feel dizzy and clammy. I had no idea when she would be done. Being left in the dark about what’s going on is anxiety-provoking in an already anxiety-provoking situation.

7. Suddenly, it was mercifully over. I stood in the corner, my back turned and got dressed. I was told to sit in the waiting room again, but I didn’t know why. Another woman came about 20 minutes later and told me I could go. I wasn’t informed what was to happen next or when my test results would be shared with me. I got out of there as fast as I possibly could. Knowing what will happen next does help.

I met my husband in the hall and he enveloped me in a hug. What took so long? Did they find something? he asked, clearly alarmed. I shook my head and said, just please take me home.

Listen, I don’t need emails or comments telling me I should have spoken up. I know how to speak up. I also know how to submit a complaint but I gotta tell you – a lot of good that’s done me in the past. Sometimes all we can do is put our head down and endure horrible situations. I don’t always feel like being an advocate. I am not always strong. That’s ok too.

But I hope I have demonstrated with these stories how one person can make a difference. That the little things matter. That what is not a big deal for health professionals (like topless patients) might be a big deal for us.

Those who work in health care can make a hard situation better by demonstrating compassion. For my whole mammogram experience, all I can say is: I know you can do better.

As Anne Lamott says, there are only two prayers: Help me help me help me. And thank you thank you thank you. For the ultrasound technologist, I say thank you. Thank you for making things a little bit easier for a scared, traumatized woman with breast cancer. What you did mattered. In fact, all those so-called little things you did – that took no extra time at all – mattered to me a lot. For you, I am tremendously grateful. xo.

I once got up in front of an audience of clinicians and announced: I am a difficult mom. I added, if your child was hospitalized, you’d be a difficult mom too.

I was on a mission to change the way family ‘complaints’ were viewed at this children’s hospital. When I resigned from my position last year, this work was left half-undone. I hope it has continued.

My assertion was this: what if family complaints were seen as constructive feedback? What if we, as staff, sought out this feedback and saw complaints as wisdom? And then we applied wisdom from families that grew from difficult situations to improving the quality of care at the hospital? This was a common-sense, but revolutionary notion.

I drew a fancy process chart with a narrative to encourage a standardized way for staff and managers to respond to constructive feedback. I suggested that all staff – including those in clerical positions – especially those in clerical positions – be offered ‘conflict management training’ to prevent issues from escalating. This type of training teaches things like, ‘saying yes instead of no,’ – and customer service concepts. While the term ‘customer’ makes many folks shudder, think about if those who work in health care are committed to care and service. Drop the word ‘customer’ and then you can simply think about serving patients and families instead.

But first, I had to share my story in the auditorium packed with hospital staff about how I’d been a difficult mom. As with most of my talks, my intention was for the staff to see themselves reflected in my words. I asked them to think how they would respond if they had a concern when their loved one was in the hospital. I can’t imagine that most health professionals would be meek and compliant family members.

I explained how it felt to be a mom in the hospital: You may well be catching families when they are at a low point in their grief. I once had a wise physician tell me she teaches medical students that anger is often masking fear. Often anger is misdirected. Families may be seeking a diagnosis, reeling from a catastrophic accident and worn down by the system.

I talked about the reasons why families can be challenging partners:

Loss of control

Fear

Pain

Grieving

Information overload

Feeling hopeless

Cultural differences with staff, leading to staff assumptions and miscommunication

Fear of negatively affecting their child’s care if they speak up

There are certain practical things can make this worse. Lack of sleep. No coffee. Being hungry. Worry about other kids at home. Worry about money and work. Compound that with stress about their beloved child-patient and you create a difficult situation, not a difficult family, says this article called Difficult Families?

I gently suggested: please pause and always consider how families are feeling. You might not be able to put yourself in their shoes, but move towards a kinder understanding of their perspective. One lesson I learned from my divorce was ‘don’t poke the bear.’ Why make angry people angrier? There is no healing in that.

I had been introduced to many families at the hospital in the midst of their ‘complaint’ process. I didn’t want to be the complaint lady – instead, I wanted to teach staff how to prevent complaints themselves and that’s by being patient and family centred. I wanted to suggest how to respond to negative feedback when it inevitably occurs. (I think we can all agree that hospitals are not perfect places). This is my ‘teach a person to fish’ philosophy. Immediately shuffling families off to some complaint lady only minimizes their concerns, absolves staff of any responsibility and teaches folks nothing.

The staff just didn’t know what to do with these families. They felt defensive and took negative feedback personally. This is human nature. Some wrote families off as ‘difficult’ or ‘hysterical,’ which is an easy way to stereotype and dehumanize people so you don’t have to think of them as people anymore. It is good to pause to notice if we are categorizing people and why.

I shared some of my personal approach to partnering with families who had constructive feedback. (And if we think of it, wouldn’t all families and patients have constructive feedback after an experience, if we only we were brave enough to ask them? Why do we wait until they bubble up as ‘complaints’?).

Sue’s Philosophy For Staff Working Families Who Have ‘Complaints’

Check in with how you are feeling. Don’t judge your feelings but be aware of them. Take some deep breaths. Go for a walk before you pick up the phone or meet with families if you can.

Don’t delay responding to the family. Delays make things fester.

Avoid escalations over email. Be respectful and suggest meeting in person if possible. (See #7).

Consider framing complaints as constructive feedback and being open to learning in order be better – both personally and professionally. We can all improve.

Consider how constructive feedback can feed into quality improvement activities to improve the experience for future families.

In this purely unscientific approach, I found that the root of 90% of ‘complaints’ was that people didn’t feel listened to, so….

Start by setting a warm tone for authentic listening. Consider meeting outside the hospital, going to the families in their own communities – at their homes or a local coffee shop. Give families choice in when and were they would like to meet. Don’t drag them into the hospital again.

Suspend the notion of being a fixer and show up as a healer instead.

It is okay to say I’m sorry.

It is okay to say I don’t know.

Ask the family what they’d like to see as a solution.

Follow up and do the things you promised to do.

Consider asking the family if they’d like to share their wisdom with others in some way. In my experience, in time, families with ‘complaints’ have the most valuable lessons to teach to Grand Rounds, medical students, committees and councils (if they so want). Many families have a strong need to improve situations in the system so they don’t happen to other families too.

Take care of yourself after challenging situations at work. Engage in reflective practice techniques, thinking about how things went and how you would make them better next time. Do not forget to be kind to yourself too.

There’s no research behind my philosophy. There’s just 24 years of being a mom and thinking about how I wished I was treated when I was speaking up for my children (and more recently, advocating for myself as a patient). I’ve been ignored, minimized, blacklisted and dismissed over the years. While this feels crappy because I like to be liked, I still don’t regret speaking up.

As Audre Lorde says: When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it is better to speak.

It is up to those working in systems to honour all voices, not just the positive ones. You can’t be heroes all of the time. But every single person who works in health care can be a healer. Please, help us heal. Don’t turn away from our suffering. You might just learn something from what we have to say.

The Stollery Family Centred Care Council had its first meeting in October eight years ago. Soon after the holidays were approaching, so we decided to have a Christmas party. Hosting a party with this newly formed group of people seemed like a natural thing to do.

It was wholly unofficial, but in cahoots with Heather, the Family Centred Care Manager, we went ahead and did it. In the early days, we embraced a just do it and apologize later philosophy. We were pioneers in a new land.

We had no budget and we couldn’t serve alcohol in a hospital setting (of course), so my husband and I decided to host at our house.

We sent out invitations to the entire Council – senior leadership, family reps, physicians, clinicians – stressing that this was a family party – partners and kids were welcomed. We made it potluck to cut down on expenses and I think I had a jar at the door for folks to donate to our booze fund. Heather and I wrote out personalized Christmas cards for everyone. I bought sequinned Santa hats from the dollar store for all the kids. I don’t know how much all this cost. There was no funding and it didn’t matter.

As is typical for a December evening in Edmonton, it had snowed and the roads were icy and awful. But our doorbell kept ringing and boots and parkas piled up in our entrance as more and more guests arrived.

Here’s what I remember: Serving cocktails on a silver platter at the front door. Children running wild through our house: kids jumping on beds, kids running up and down the stairs, kids pulling out all my son’s toys (Note: this was all awesome).

The Senior Operating Officer of the hospital was there – her newly-retired husband had cooked an amazing dish for potluck while she was at work and he had braved the roads to meet up with her at our place. Another senior director came with her two children and husband. Her kids were playing with the so-called ‘Stollery kids’ – our kids, the patients – who were a diverse lot, a collection of children with disabilities and medical conditions. Seeing them all zooming around our house – at varying speeds, with various mobility issues – was as it should be.

My husband standing in our kitchen, deep in conversation with a dad whose child had died at the hospital the year before. Me, checking on kids downstairs, standing in the doorway of the bathroom, talking to a PICU intensivist while his young daughters ran amuck around us. A neonatologist popped by on his way from his martial arts class, leaning against the wall in the hallway chatting with a mom. It was a houseful of people connecting with people as human beings.

My husband and I hosted this party like every other party we had ever had at our house. Our formula was a bounty of food, fancy cocktails, blaring music and an open door. For whatever reason, people showed up. I understand now how important the simply showing up is. The people who came to that party were providing evidence of their early commitment to the family centred care cause. For the staff, this was an unpaid, after-hours affair. For the families, this was the end of a long day. But they still showed up. I believe this evening was a tipping point. It was the beginning of culture change at the hospital.

There were Christmas parties like this for about three years. The amount of people involved in family centred care at the hospital expanded and outgrew a house party. The celebrations switched to summer barbecues at community halls instead, which was a natural progression of growth.

But those early holiday parties were special. They were intimate and inclusive affairs. There was a complete shedding of roles those evenings. Titles were taken off along with the parkas and boots at the front door. There was a relaxing of tightly held positions with a cocktail or two. Meeting everybody’s partners and kids felt really important. By the end of that first dark December evening, we were no longer ‘professionals’ and ‘families.’ We were colleagues and blossoming friends.

If you are reading this and thinking that there’s no way a house party with your hospital staff and patients/families would ever happen, here’s my challenge to you.

If you really want to partner with the people you serve, you need to see them – and your staff – as people first. It is your job to remove all the barriers to create an environment where you would be able to host a party at your house. (YES AT YOUR HOUSE).

If this seems impossible, you have to take away the preconceived rigid notion of what it means to be a professional, ignore the policies and procedures forbidding socializing and fund the damn party out of your own pocket if you have to.

This is not a movement created around a boardroom table. Providing opportunities to lose your title and connect as human beings is the only way you actually seal this deal. Celebrating together – breaking bread, getting to know each other, toasting to the season – is a good way to start.

I often get asked how some health organizations are successful at meaningfully engaging patients while others treat patients as if they are expendable checkmarks on their to-do lists.

This weekend, I was reminded of the ingredients that make up the secret sauce for engagement. I was invited to the Stollery Children’s Hospital for a reunion of the youth, families and staff who have been involved with their patient + family centred care movement. I had worked there for four years as their Family Centred Care Consultant to help establish their Council and their Family Talks program. (Of note, I moved to BC to do the same work and failed miserably here. You can lead a horse to water, but you can’t make it drink).

This weekend, amongst my beloved former colleagues and friends, I had a great epiphany. My lightbulb moment was this: I was struck by three value-based elements that are mandatory for any health organization or professional who aspires to put patients first.

1. Demonstrate integrity.

There must be an alignment of an organization’s professed values and their actual behaviour. If your mission statement says Patients First then the behaviour of your organization (through policies and processes) and the actions of your staff (this includes everyone – parking attendants to clinicians and Patient Engagement staff, especially Patient Engagement staff) must actually put patients first, every single time.

This means doing serious self-reflection on how you treat ALL patients and how you handle challenging feedback. You cannot roll your eyes at ‘difficult patients’ or ‘hysterical mothers’ or say that you are ‘babysitting families’. Or dismiss patient feedback or the stories you do not want to hear.

Also, the only people who can tell you if you are patient centred are the patients themselves. You cannot decide this for yourself so you can slap it all over your website like some sort of public relations exercise.

Integrity also means if you say you want to hear the patient’s voice, you have to make space for the uncomfortable stories and honour those who share them with you. Listen hard. Don’t turn away. There is growth and learning in the discomfort.

2. Give up your power.

If you want to collaborate with patients in a meaningful way, you have to be willing to give up your power. While patients are exceedingly vulnerable in health care settings, we also aren’t stupid. At the bedside, you have to concede some of your control and do everything you can to minimize trauma and suffering. Plus, for God’s sakes, cease all practices that strip people of their dignity and stop treating patients like dumb rats.

If you want patients around your boardroom tables, then you have to actually make room for them at those tables and treat them as equals. That includes not pulling stunts like scheduling meetings last minute, having only one token patient and demanding that people volunteer their time.

When giving up your power, you also must admit that you can’t and don’t know everything. Believing you are the expert is the ultimate patient centred care killer. Put your ego aside.

3. Grant patients a voice

Creating opportunities for patients to safely speak up and share their wisdom supports them to heal. It also helps them connect with one another to build their own communities and find belonging. Oppressing and dismissing stories or feedback harms patients. Ask yourself: do you want to heal or do you want to harm?

If you really want to put patients first, the first step is to sit down and be humble.

My heart was bursting at the reunion. I felt like a proud grandma. There are so many awesome families and staff who are now lighting the way. Kudos to the Stollery for demonstrating leadership and integrity. Brava/bravo staff, youth and families: Heather, Christine, Karen, Michelle, Amanda, Sarah, Christie and so many others. Put your head down and keep going. You are are the role models for this work in Canada, for both the pediatric and adult worlds.

Other centres? Pay close attention. They’ve set the bar high for you.

As Don Berwick says, take off your business suits and lab coats and join together with us patients and families.In rigid health care systems, this demands an innovative mix of leadership, culture shift, behaviour change and alignment of stars. If it isn’t uncomfortable, it isn’t disruptive and you aren’t growing.